By Amy Ratner, Medical and Science News Analyst

More than one out of four celiac disease patients diagnosed at least five years ago have not had follow-up healthcare for the condition in the past five years, a new study by Beyond Celiac and other researchers found.

Twenty-seven percent of nearly 1,500 adults with celiac disease surveyed for the study did not see a healthcare provider, and most said the reason was that they “were doing fine on their own.” Others said they did not visit a doctor or dietitian because “they did not need to, their provider was not knowledgeable or previous visits were not helpful”.

The results of the study were presented at Digestive Disease Week (DDW), the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. The meeting showcases more than 5,000 abstracts and hundreds of lectures on the latest advances in gastroenterology research, medicine and technology.

Worrisome results

“Our results suggest that many individuals with celiac disease manage without ongoing support,” wrote the study authors, who also included researchers from Columbia University Medical Center, Beth Israel Deaconess Medical Center, and Vanderbilt University School of Medicine. They said the results of the study emphasize the need for greater access to high quality care.

Anne Lee, Ph.D., a study author and instructor of nutritional medicine at the Celiac Disease Center, Columbia University, called the study results “worrisome,” especially since the field of celiac disease is changing and new information that can help patients is being discovered.

Study participants who did report seeing a healthcare provider generally had better dietary adherence, worse symptoms and worse quality of life than those who did not, the study found. Lee said this is due to the fact that those who have symptoms are most likely to seek help and more likely to see their quality of life go down as part of aiming to follow the glute-free diet more closely.

On the other hand, as patients became less adherent to the gluten-free diet, the chance they saw a doctor or dietitian decreased. Lee said this could reflect a patient’s reluctance to admit to a healthcare provider that he or she is intentionally not following the diet. And the patient may think they already know that the advice they’ll get is to cut out the gluten lapses. However, it could be because patients who don’t see a health care provider are not getting the support they need to do better with the diet, Lee noted.

Overall, the study reflects a state of celiac disease management in which it takes many years to be diagnosed, physicians are not knowledgeable about the condition and aren’t helpful even when follow up care takes place. Patients’ “diagnostic odyssey” can give them a negative opinion of the healthcare system and reduce the likelihood that they will seek follow-up, the study discussion notes. “If this is the case, then increasing the speed of celiac disease diagnosis could contribute to improved celiac disease management after diagnosis,” the authors wrote.

Study participants, who were surveyed in March 2015, were active members of the Beyond Celiac online community, including those on Facebook and subscribers to organization’s email newsletter.

The study conclusions also highlighted the opportunity patient advocacy groups such as Beyond Celiac have to bring patients and healthcare providers together to improve celiac disease management.

Follow-up care critical

The American Gastroenterological Association and the American College of Gastroenterology recommend regular healthcare follow up with a physician and dietitian. This care is seen as critical in providing patients with accurate information about the gluten-free diet, which is currently the only treatment for celiac disease, and improving adherence to it.

Additionally, healthcare follow-up can include blood tests that measure celiac disease antibodies that indicate ongoing gluten exposure and, when needed, a biopsy to detect intestinal damage. Vitamin and mineral levels can also be followed and development of other related autoimmune conditions picked up. Lee said lack of attention to bone density, which can be affected by celiac disease, and vitamin and mineral levels particularly concern her with patients who don’t regularly see someone who is knowledgeable about celiac disease.

Even those who do seek follow-up may not be getting the care they need. A 2012 study found that follow-up care for many patients is inadequate by multiple measures, with only 35 percent of patients followed for more than four years after diagnosis getting care consistent with recommendations.

“Even for the 66 percent of respondents who reported having visited a healthcare provider about celiac disease in the last five years, it is likely the level of follow-up does not meet the AGA recommendations, the new study presented at DDW noted.

Who seeks care and why

Study participants filled out validated questionnaires on dietary adherence, symptoms and quality of life. When researchers looked at the specific questions that were most strongly associated with having visited a healthcare provider, they found that patients who strongly considered the consequences before taking action, who rated their health in relationship to celiac disease poorly and who said they were frightened by having the disease were all more likely to have seen a healthcare provider.

“We need to better communicate that follow-up should be routine,” Lee said. “Even if patients say they are doing fine, that does not mean everything that should be taken care is.”

Education improves adherence

In a second study presented at DDW by Beyond Celiac and colleagues, researchers looked at the impact patient education about following the diet had on those diagnosed and treated at Thomas Jefferson University Hospital.

Seventy-five newly diagnosed study participants took surveys about dietary adherence and quality of life before and after receiving educational information about the gluten-free diet and lifestyle created with input from Beyond Celiac. The National Institutes of Health recommend patient education as a key element in effect management of celiac disease.

Scores related to dietary adherence were four times better after patients received the education information, and all the patients in the study advised family members to get screened for celiac disease afterward, compared to 65 percent beforehand. Researchers did see a slight decrease in evaluations of quality of life, which they attributed to patients feeling “overwhelmed by keeping a gluten-free diet and the restrictions it places on their lives.

Overall, they concluded the significant increase in patients’ ability to follow the diet emphasizes the importance of patient education.

Stay tuned for an upcoming episode of our the new Beyond Celiac podcast, Celiac Straight Talk, which will do a deep dive into the issue of follow-up care and celiac disease management. Anne Lee will be joined by fellow researcher Jake Hughey, Ph.D., of the Center for Precision Medicine at Vanderbilt University, and patient Rachel Young to talk about the challenges of getting good follow-up care for a condition often left in the hands of patients. What’s the impact of having no celiac disease drug and only the gluten-free diet as a treatment?

You can also stay up-to-date on all the celiac disease news from DDW and more by signing up for our Research Opt-In here.